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Health & Well-being

Mary Fran on Rare Disease Day 2018 | Show Your Rare

Reality is rarely what it seems

Some days I think the only thing I truly know is pain. CRPS has been the the biggest thing in my life for the nearly 8 years that I have known what it was. It is the thing that forces me to overcome hurdles that are normal people Thursdays. In honor of Rare Disease Day‘s campaign to show your rare this year, I thought I would write about an ordinary day, a day whose only remarkable feature is that it is a day, seen through the lens of CRPS. Read more

hello

New Year, New Me?

It’s 3 weeks into 2018. I’m 22 days out of the dumpster fire that was 2017. The government has shut down, the world seems to be teetering on the brink of war and it seems more and more like the only way to survive with CRPS will be to go on disability.  Read more

mary fran wiley | two years later and im still dancing

In Motion – Two Years of Dance

I like milestones. I like looking back and seeing just how far I’ve come.

Especially because this milestone. Yesterday was the one year anniversary of Mary Fran 3.0. It’s been 366 days since my shiny new cyborg parts.

But more importantly, it’s been just over two years since I took my first tentative steps into the world of dance.

This post is sure to get a little lengthy, I’m reflecting on what all my teachers have taught me in the past year. For the TL;DR version, just watch the video (after the break). Read more

Life with a rare disease

The Pain of Rarity

This hell? One in a million.

Technically, it’s more like 26 in 100,000. (For reference: a disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000, in the USA when it affects fewer than 200,000 Americans at any given time).

I don’t know how to write about this disease without it sounding like a melodramatic Thought Catalog piece. A bit of pain. Some pithy statement about rarity and diamonds and blessings. Maybe a little angst (perhaps anger?). And ending with hope. Sometimes that hope is real, sometimes it feels a wee bit disingenuous. Today, February 28th, is Rare Disease Day, so please indulge me just a little.

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Little Moments of Happy

These are turbulent times. I can’t look at the news or Facebook without discovering something new that makes my stomach churn or my heart sink. I read stories about power and privilege, most often highlighting not only their existence but of some new abuse. I see stories of men making lewd comments to women because they can and stories of immigrants being detained at airports despite having been given prior permission to arrive. I am reading about men deciding what women should do with their bodies and walls that will cost billions of dollars and increase hate.

All this pain and anxiety in the world is making every day a little grey. As rights and freedoms dissolve in front of my eyes, reality is zapping the joy from my soul. Read more